ICN Weekly Newsletter – June 21, 2014

Blogs, News & Announcements

It might surprise you to learn that anxiety is a strongly related condition to IC and pelvic pain. It was the human genome project which made the connection. Researchers trying to determine which section of the human genome correlated with anxiety discovered that a large, distinct subgroup of anxiety patients also had interstitial cystitis. Urologists then confirmed that most of their IC patients also struggled with alarming levels of anxiety. Subsequent research studies now suggest that there is a genomic linkage between the two conditions.

The end result is simple. Most IC patients struggle with varying levels of anxiety. Some report that they’ve always lived with anxiety disorder and/or that other members of their family also struggle with anxiety. Other patients report that their anxiety developed after the onset of their bladder symptoms, suggesting that pain, fear and insecurity about the future might be driving their symptoms. In either case, you certainly aren’t alone. Anxiety disorders affect about 40 million American adults age 18 years and older (about 18%) in a given year, causing them to be filled with fearfulness and uncertainty.

Bladder Photo & Video Gallery

Have someone in your family who just doesn’t grasp what you’re struggling with?

We’ve just updated our online gallery to include several videos and pictures that show what mild, moderate and severe IC looks like! See dozens of pictures here!

We would love to feature your pictures too! If you have a copy of your video or still pictures of your bladder, please send them to: jill@ic-network.com.

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IC Chats & Conversations in the ICN Support Forum

“I’m near remission”

We love success stories! ICN Member mouse shares that with allergy testing, she discovered that she was allergic to dairy, eggs and wheat. By eliminating those foods, her symptoms have improved dramatically. She’s also been working on her pelvic floor and trigger points. Read her inspiring message here!

“My Story and Some Questions”

New ICN member LennyB shares their story about how IC was diagnosed at the age of 21, this after IBS was diagnosed at 15 and epilepsy at 17. She’s slowly improving but has some questions for other patients about how long pain might take to improve, PFD therapy and more. Could you provide some insight and support? Read it here!

“Does Breathing or Stretching Help You?”

New ICN member MiniHart shares that the stress and anxiety of undergoing tests and waiting for answers has made her symptoms worse. She asks if breathing or stretching has really help patients. Our answer, of course, is yes. Can you share your experience? Read it here!

“Costs of Home Instills – What does Medicare Cover?”

ICN member Itsme asks patients who are doing home instillations if its covered by medicare. She’d like to know how much it costs and how difficult it is to get from pharmacies. We know that many of our readers have done home instills with success. Could you please share your experience? ? Read it here!

“Migraine Medications Triggering IC Flares “

ICN member RodeoMom is looking for suggestions from patients who are using migraine medications. Her neurologist wants her on a high acid diet as well as medication, but they are triggering IC flares. She’s looking for advice from anyone who has gone through this. Read it here!

“Exercise Helps Patient Achieve Remission”

ICN member TeachMeMath shares that she’s using Amy Stein’s ten exercises to reduce pelvic pain from the book Heal Pelvic Pain with great success. Anyone else using it? Read her story and suggestions here!

IBS Bowel Blues?

If you’re like many IC patients, you’re also struggling with IBS and your bowels are just as unpredictable as your bladder. Researchers have now given us a giant clue as to why the two conditions coexist. Studies have now shown that the some of the nerves in the bowel and bladder are shared. Thus, when the bowel shows signs of irritation, the bladder does as well. When the bladder is irritated, the bowel shows similar irritation. Simply put, the nervous system in our pelvis is extremely sensitive and it takes very little to overstimulate our bladders and our bowels.

If you are struggling with chronic constipation, unpredictable diarrhea or both, here’s a product that may help. Heather’s Tummy Care offers a fabulous fiber that works very well for patients with a sensitive bowel and bladder. HTC’s Acacia Senegal Fiber is water soluble, gentle on the bowel yet provides enough bulk to help improve bowel function. On the other hand, fibers that contain insoluble fiber, such as psyllium husk or granola, often prove too irritating and can cause yet more pain and discomfort. If your bowels are driving you batty, we suggest giving this fabulous product line a try!

ALERT! Shipping Summer Months During Summer Months

CystoProtek – Cysto Renew – Desert Harvest Aloe – CystaQ

If you rely on supplements to help reduce your bladder discomfort, take note that they are very difficult to ship during the summer months due to heat damage. If you’re in the USA, we strongly encourage you to buy enough NOW to get you through July and August!

Update on MultiRight Low Acid Multi Vitamin

MultiRight, the low acid vitamin complex that has been getting solid reviews from IC patients for not irritating the bladder, should be back in stock within two weeks! This from the manufacturer, Farr Labs!! The price will be increasing to, we believe, $22.99 for a three month supply! You can sign up to receive notice about its return here!

A New Pain Therapy – Pain Shield

PainShield® MD, a new wearable device that delivers low-frequency therapeutic ultrasound, promises to be a non-invasive, drug-free alternative for pain management in patients who suffer from debilitating pelvic pain.

In patients with long-standing, difficult-to-treat pain, PainShield MD has been found to significantly reduce pain associated with a number of pelvic and abdominal conditions, including interstitial cystitis, irritable bowel syndrome and chronic pelvic pain. A number of patients have been able to reduce or eliminate their use of medications, including opioids.

PainShield MD is lightweight, wearable, portable and smaller than a TV remote can be used almost anywhere and anytime – at home, work or the clinic, or even while sleeping offers simple hands-free operation

Visit their web site, where you can learn more about the clinical effects of PainShield MD, as well as its technical details. You will also be able read testimonials from patients who have benefitted from PainShield MD. Lastly, please download our information brochure which you can share with your health professionals.

Share This Story, Choose Your Platform!

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders.
As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life.
An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions.
With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

Interstitial Cystitis Network

… we have a small favour to ask. More people are reading the IC Network than ever but advertising revenues across health media websites are falling fast. We haven’t put up a paywall – we want to keep our web site and support services as open as we can. The IC Network's independent journalism takes a lot of time, money and hard work to produce. But we do it because we want to help you find relief.

If everyone who reads our reporting, who likes it, helps to support it, our future would be much more secure. For as little as $25, you can support the IC Network – and it only takes a minute. Thank you.

The ICN is a health education company dedicated to IC and chronic pelvic pain syndrome. Rated the top patient website dedicated to IC in peer reviewed studies by Harvard (2011) and the Univ. of London (2013), our goal is to empower, educate and encourage patients and providers!